U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration's HIV/AIDS Bureau

Ryan White CARE Act Title III 2001 Data Report

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Executive Summary

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act provides funding to States and other public or private nonprofit entities to develop, organize, coordinate, and operate health systems for the delivery of essential health care and support services to medically underserved individuals and families affected by HIV disease. Title III of the CARE Act authorizes the Early Intervention Services (EIS) Program, which funds comprehensive primary health care services for individuals living with HIV disease. The Title III EIS program administers grants to provider organizations in communities across the United States.

As of January 2003, there were 337 Title III EIS funded programs. The data contained in this report was provided by 248 of the 310 Title III EIS programs funded in 2001. The 62 grantees not included in this report are 58 newly funded programs with less than three months of data to report, and four grantees with missing or incomplete data. Reporting Title III EIS grantees provided early intervention services in 45 States, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. Slightly more than one-third of reporting grantees were publicly-funded community health centers; slightly less than one-third were hospitals or university-based programs. The remaining one-third were community-based organizations, health departments, substance abuse treatment centers, and other facilities. Nearly three-quarters of grantees reported targeting services to injection drug users and women and children for Title III EIS services in 2001.

More than 150,000 HIV-positive individuals received primary care services provided by reporting Title III EIS grantees in 2001. Slightly more than one-quarter of all patients served were new patients in 2001. Seventy percent of all patients were males, and two-thirds of all patients were racial/ethnic minorities. African Americans, not of Hispanic heritage, comprised nearly half of patients receiving Title III EIS services; one-third were White, non-Hispanic; one-fifth were Hispanic. The vast majority of patients served were between ages 30 and 49. Close to half of male patients served reported having been exposed to HIV through sex with other men, one in five males reported HIV exposure through heterosexual contact and one in six reported being exposed through injection drug use. Among females, two-thirds reported exposure to HIV through heterosexual contact and one-fifth through injection drug use.

In addition to HIV-related primary care services, Title III EIS grantees continued to provide a wide array of subspecialty medical care in 2001. More than half of reporting grantees provided nutritional counseling, mental health services, obstetrics/ gynecology services, oral health care, substance abuse counseling and treatment, on-site dispensing of pharmaceuticals, optometry/ophthalmology services, and dermatology services as part of the clinical services offered in their Title III EIS program. Ninety-four percent of Title III EIS grantees reported that they provided on-site counseling and testing services in 2001. Additionally, a variety of social support services were available through the Title III EIS Program or referral.

The five most common support services Title III EIS grantees made available to their clients through a variety of funding sources were assistance in obtaining HIV-related medications, transportation, housing assistance, support groups, and food bank/home-delivered meals.

The cost of providing primary health care services to HIV-positive patients for reporting Title III EIS programs in 2001 was greater than $455 million. The total cost of all other services provided by Title III EIS grantees in 2001 was nearly $88 million. Title III EIS funds covered slightly less than one-quarter of the cost of providing primary health care and one-fifth of the cost of all other services.

Introduction

CARE Act Overview

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (Public Law 101-381), as reauthorized in 2000, provides funding to States and other public or private nonprofit entities to develop, organize, coordinate, and operate health systems for the delivery of essential health care and support services to medically underserved individuals and families affected by HIV disease.

The CARE Act includes the following major components:

Title I: funding to eligible metropolitan areas (EMAs) hardest hit by the HIV/ AIDS epidemic;

Title II: formula funding to States and territories to improve the quality, availability, and organization of health care and support services for people living with HIV disease;

Title III: funding to public and private nonprofit organizations for outpatient HIV early intervention services (EIS), and for early intervention services planning, and capacity building;

Title IV: funding to public and private nonprofit organizations for the coordination of services and enhanced access to research by women, children, adolescents, and families infected or affected by HIV disease; and

Part F: funding for the Special Projects of National Significance (SPNS) research and demonstration programs; the Dental Reimbursement Program; and AIDS Education and Training Centers (AETCs).

Administered by the Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB), all CARE Act programs are managed within the context of four major characteristics of the Nation’s health care system. These observations include the following:

The HIV/AIDS epidemic is growing among traditionally underserved and hard-to-reach populations;

The quality of emerging HIV/AIDS therapies can make a difference to the lives of people living with HIV disease;

Changes in the economics of health care are affecting the HIV/AIDS care network; and

Outcomes are a critical component of program performance.

Title III Early Intervention Services Program

Title III of the CARE Act supports comprehensive primary health care and other services for individuals who have been diagnosed with HIV disease and who might otherwise not obtain the HIV care that they so desperately need. HIV early intervention services/primary care provided in an outpatient setting helps to ensure a continuum of care that includes: 1) identifying persons at risk for HIV infection and offering them counseling, testing, and referral services; and 2) providing lifelong comprehensive primary care for those living with HIV/AIDS. All Title III EIS programs are expected to provide the following five categories of services, either on-site or through formal arrangements with other providers:

HIV counseling, testing, and referrals;

Counseling and education on living with HIV disease, including availability and use of treatment therapies;

Appropriate medical evaluation and clinical care, such as CD4⁺ T-cell monitoring, viral load testing, antiretroviral therapy, prophylaxis and treatment of opportunistic infections, malignancies, and other related conditions;

Oral health care, outpatient mental health care, outpatient substance abuse treatment, nutritional services, and specialty medical care either directly or through a formal referral mechanism; and

Appropriate referrals for other health services.

All grantees must use at least 50 percent of their Title III EIS funding for the provision of HIV-related primary care. Most grantees use much more than 50 percent of their Title III EIS funds for primary care services.

Data Collection Process

Title III EIS grantees are expected to have mechanisms in place to collect and analyze data for reporting and to guide program management. Grantees are required to submit an annual data report to HAB by March of each year. Newly funded grantees are required to collect data starting the first January after their initial award and submit data the following year. Information submitted by Title III EIS grantees in their annual aggregate program data reports currently includes the following:

Contact information;

Program and organizational information (e.g., type of organization, populations targeted by program/organization);

Number of clients served and client demographics;

Services information (e.g., number of clients receiving services by type of service);

Grantees have the option of reporting their data in one of three ways: on paper forms, on a computer diskette, or via Web-based data entry.

HAB has developed a new CARE Act Data Report (CADR) for all CARE Act Titles/Programs. This new reporting system integrates the individual aggregate data report formats that have historically been completed separately by Titles I, II, III, and IV grantees into one annual aggregate reporting form. Grantees have begun using this new CARE Act Data Report to collect information for their calendar year 2002 data report. Grantees will submit data using the new CARE Act Data Report in 2003. CAREWare, a free software package, is available on the HAB Web-site (http://hab.hrsa.gov) to assist grantees in collecting client-level data and generating the annual CADR.

Data Characteristics and Definitions

Readers of this report should interpret the data with the following three items in mind: 1) Title III EIS grantee structure and efforts to obtain unduplicated data at the grantee level; 2) differences in classification of those receiving a service depending on the nature of the service; and 3) reporting scope for services.

Title III EIS Grantee Structure and Efforts to Obtain Unduplicated Data

Most Title III EIS grantees subcontract with other organizations to provide a full range of services; these organizations are considered to be part of their Title III EIS

program. Title III EIS programs may also make referrals to organizations outside of their programs. Title III EIS programs do not have contractual relationships with these referral organizations. Therefore, patients are often seen at multiple sites within a given Title III EIS program and/or its referral agencies. As a result, when the individual Title III EIS grantee (also known as the grantee of record) submits its annual, aggregate program data report, that grantee is required to ensure that their data is aggregated only after steps have been taken to make certain that their patient count across all sites accounts for each individual patient only once. When this process is completed properly, regardless of how many times and at how many different sites their patients were seen, the result is an unduplicated client or patient count. This report presumes that all client and patient counts contained herein are unduplicated.

Classification Differences for Persons Receiving Services

The Program Data Report makes a distinction between persons served depending on the type of services received. Persons served can either be “patients”, “clients”, or “individuals

A “patient” is an HIV -positive person who receives at least one primary health care service during the reporting period;

A “client” is someone who is HIV -infected or affected and receives case management and eligibility assistance

An “individual” is someone who receives counseling, testing, and/or outreach services.

All primary care, referral, and demographic data presented in this report are based on patients. A total unduplicated count of patients who received primary care is referred to as “all” patients. A patient who received primary health care services for the first time at the reporting agency is referred to as a new patient. Therefore, new patients are a subset of all patients.

Reporting Scope

Grantees are expected to report on all HIV-infected persons who received services eligible for Title III EIS funding, regardless of actual funding source used to pay for these services. Reporting services in this broad manner provides a comprehensive picture of the services being delivered to HIV-positive individuals by Title III-funded providers.

This report was prepared using data provided in the Ryan White CARE Act Title III EIS Program Data Reports submitted by 248 Title III EIS grantees for 2001. The narrative portion of this report is intended to highlight important points found in the data and includes descriptive information about: 1) grantee characteristics; 2) patient characteristics; 3) service characteristics; and, 4) fiscal information. Detailed appendices follow the report narrative.

2001 Program Data Report

A total of 310 grantees received Title III Early Intervention Services (EIS) funding in 2001. Fifty-eight grantees were new in 2001 and, therefore, not required to submit program data for this cycle. Of the remaining 252 grantees required to submit program data, 248 were compliant. The four grantees that did not submit data in 2001 are listed in Appendix E. While verification was completed for most data reported by the 248 grantees, some data elements were not completed by all grantees. The degree of missing or incomplete data is noted throughout the report.

Grantee Characteristics

The 248 reporting Title III EIS grantees provided services to people living with HIV in 45 States, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. Only five States—New Hampshire, North Dakota, South Dakota, West Virginia, and Wyoming—do not have Title III EIS-funded providers in their State. (As of September of 2002, there are Title III EIS programs in New Hampshire, South Dakota, and West Virginia). Grantees are diverse in terms of organization type, geographic characteristics, and special subpopulations they target for services. Detailed tables displaying data on grantee characteristics are included in Appendix A.

Organization Type

As shown in Table 1, 36 percent of reporting grantees were publicly funded community health centers. Twenty-eight percent of grantee organizations serving HIV-positive clients in 2001 were hospitals or university based programs, 20 percent were community-based organizations, and 15 percent were health departments. Substance abuse treatment centers and other facilities comprised the remaining two percent of reporting Title III EIS grantee organizations. Data on grantee organization type by State are presented in Appendix A, Table A-2.

Table 1. Types of Title III EIS Grantee Organizations Providing Services to Clients in 2001 (N=248)

Type of Organization	Number	Percent*
Publicly-funded Community Health Centers	89	36%
University or Hospital Based Programs	69	28%
Community Based Organizations	50	20%
Health Departments	36	15%
Substance Abuse Treatment Centers	2	1%
Other Facilities	2	1%
Total	248	100%

*Percents may not sum to 100 due to rounding.

Geographic Characteristics

Fifty-three percent of grantees reporting in 2001 were located in Ryan White CARE Act Title I-defined eligible metropolitan areas (EMAs); 45 percent were located in non-eligible metropolitan areas (Appendix A, Table A-3).

Twenty-two percent of grantees were located in Public Health Service Region 2, which encompasses the northeastern United States (including New York). An additional 22 percent of grantees were in Public Health Service Region 4, located in the southeastern United States. Thirteen percent of grantees were located in Public Health Service Region 9, located in the southwestern United States. See Appendix A, Table A-1 for the number and percent distribution of grantees for each Public Health Service Region.

Special Subpopulations Targeted for Services

Title III EIS programs serve persons from all population groups. Depending on the needs of the communities they serve, Title III EIS grantees may target services to specific subpopulations that they have identified as most in need of HIV -related care.

As shown in Figure 1, 72 percent (n=179) of grantees reported targeting Title III EIS services to injection drug users in 2001, and 71 percent (n=177) of grantees targeted women and children. Other targeted subpopulations include homeless individuals (150 grantees or 61 percent); adolescents (114 grantees or 46 percent); gay, lesbian, and bisexual youth (113 grantees or 46 percent); migrant or seasonal farm workers (64 grantees or 26 percent), and; runaway or street youth (58 grantees or 23 percent).

Figure 1. Number and Percent of Title III EIS Grantees Targeting Special Populations in 2001 (N=248)

Injection drug users 72%
Women and children 71%
Homeless individuals 61%
Adolescents 46%
Gay, lesbian, and bisexual youth 46%
Migrant or seasonal farm workers 26%
Runaway or street youth 23%

Patient Characteristics

In 2001, reporting grantees provided a total of 157,803 unduplicated HIV-positive patients with primary health care services through Title III EIS programs. Of these patients, 35,592 (23 percent) were new patients in 2001. As seen in Table 2, the total number of unduplicated HIV-positive patients increased by 45 percent and the number of new patients increased by 32 percent between 1999 and 2001. Detailed tables displaying all data on patient characteristics are included in Appendix B.

Table 2. Number of Title III EIS Patients Receiving Primary Health Care, 1999 -2001

	Number of Patients Served			^{Change from 2000 to 2001}	Percent Change	Change from 1999 to 2001	Percent Change
	¹⁹⁹⁹	²⁰⁰⁰	²⁰⁰¹	^{Change from 2000 to 2001}	Percent Change	Change from 1999 to 2001	Percent Change
Total Patients	108,945	129,675	157,803	+28,128	+22%	+48,858	+45%
New ^Patients	26,991	30,169	35,592	+5,423	+18%	+8,601	+32%

Patient Demographics: Gender, Age, and Race/Ethnicity

Demographic profile data are requested for all patients receiving primary health care services. However, demographic data are not always available for all primary health care patients. This results in a discrepancy between the number of patients grantees report having served during the reporting period and the number for whom demographic data is reported. Title III EIS grantees reported gender information for 99 percent of all patients who received primary health care services through Title III EIS funded programs in 2001. Race/ethnicity and age data were reported for 97 percent of all patients served in 2001.

Gender

Seventy-one percent of clients receiving primary health care services from reporting Title III EIS grantees in 2001 were males (Table 3). The proportion of males to females served by Title III EIS grantees has remained steady over time, however the total number of patients served has increased dramatically. Between 1998 and 2001, the number of male patients served by Title III EIS programs increased 46 percent, from 75,192 in 1998 to 109,883 in 2001. The total number of female patients increased 51 percent, from 30,150 to 45,613 females served during the same time period. There was a 24 percent increase in the number of females served from 2000 to 2001, and a 21 percent increase in the number of males served during this same time period. (See Appendix B, Table B-4).

Table 3. Characteristics of Clients Served by Title III EIS Grantees, 2001

Demographic Characteristics	Number*	Percent
Gender Male Female	109,883 45,613	71% 29%
Race/Ethnicity African American (not Hispanic) White (not Hispanic) Hispanic Asian Native Hawaiian/Pacific Islander Native American/Alaskan Native	72,684 48,383 30,306 1,134 104 713	47% 32% 20% 1%
Age 0-12 years 13-19 years 20-29 years 30-39 years 40-49 years 50 years of more	1,678 1,227 19,050 58,039 53,239 20,616	1% 1% 12% 38% 35% 13%

* Clients with unknown or missing data are excluded from this table; therefore, the sum of each characteristic may be less than the total number of clients served.
** Less than 1 percent.

Of the 35,207 new patients for whom gender information was reported in 2001, 70 percent (n = 24,644) were males. There was a 33 percent increase in the total number of new male patients from 1998 to 2001. Most of the increase is seen in 2000 and 2001, where the number of male patients served increased by 18 percent between 2000 and 2001, and 11 percent between 1999 and 2000. Prior to 2000, the percent increase of male patients served was only 1 percent between 1998 and 1999. The total number of new female patients increased by 21 percent from 8,706 in 2000 to 10,563 in 2001. This represents an enormous departure from previous years, where annual percent increases ranged between six and eight percent (from 7,595 in 1998 to 8,211 in 1999, an increase of eight percent, and from 8,211 in 1999 to 8,706 in 2000, an increase of six percent). Over the four-year period, the number of new female patients served increased by 39 percent between 1998 and 2001. (See Appendix B, Table B-4).

Age

As seen in Table 4, a vast majority of patients served by reporting Title III EIS grantees in 2001 (n=111,278, or 73 percent) were between 30 and 49 years of age. Thirteen percent (n=20,616) of all patients served were 50 years of age or older; 12 percent were between ages 20 and 29 (n=19,050), the majority of whom (n=13,168, or 70 percent) were between ages 25 and 29. Two percent (n=2905) of all patients were under age 20. Age distribution among the new patient population differs slightly from the total patient population. Patients between ages 30 and 49 comprise a slightly smaller majority of new patients (n=24,461, or 69 percent). Sixteen percent (n=5,560) of new patients were between ages 20 and 29, 65 percent (n=3,640) of whom were between ages 25 and 29. Eleven percent (n=3,902) of new patients were age 50 and older, and three percent (n=874) were under age 20. (See Appendix B, Tables B-4a through B-4f).

Race/Ethnicity

As seen in Table 5, people of color accounted for 68 percent (n=104,941) of all patients served by Title III EIS programs in 2001. Forty-seven percent (n=72,684) of all patients for whom demographic information was reported to Title III EIS programs in 2001 were Black (not Hispanic). White (not Hispanic) patients accounted for 31 percent (n=48,383) of the total patients served and Hispanics made up 19 percent (n=30,306) of the total patient population served in 2001. Asian patients accounted for 1 percent (n=1,134) of patients served in 2001, while Native Hawaiian/Pacific Islander, and Native American/Alaskan Native each accounted for less than one percent (n=104 and 713, respectively) of the total patient population in 2001.

Black (not Hispanic) males comprised 41 percent (n=45,051) of the total male patient population served by reporting Title III EIS grantees in 2001 (see Table 4 below). Thirty-six percent (n=39,934) of male patients served were White (not Hispanic), and 20 percent (n=21,776) were Hispanic. Native American/Alaskan Natives comprised one percent (n=553) of male patients served in 2001, and Native Hawaiian/Pacific Islanders comprised less than one percent (n=84) of all male patients. Sixty-one percent (n=27,633) of all females receiving services from reporting Title III EIS programs were Black (not Hispanic) patients. Nineteen percent (n=8,449) of females served were White (not Hispanic), and another 19 percent (n=8,530) were Hispanic. Among female patients, Native Hawaiian/Pacific Islanders and Native American/Alaskan Natives comprised less than one percent each (n=20 and n=160, respectively) of all female patients.

Table 4. Race/Ethnicity of Title III EIS Patients by Gender in 2001

	Male		Female		Total
Race/Ethnicity	Number	Percent	Number	Percent	Number	Percent
Black (not Hispanic)	45,051	41%	27,633	61%	72,684	47%
^{White (not Hispanic)}	39,934	36%	8,449	19%	48,383	31%
^Hispanic	21,776	20%	8,530	19%	30,306	19%
^Asian	867	1%	267	1%	1,134	1%
Native Hawaiian/Pacific ^Islander	84	*	20	*	104	*
Native American/Alaskan Native	553	1%	160	*	713	*
^{Unknown/Unreported}	1,618	1%	554	1%	2,172	1%
^Total**	109,883	100%	45,613	100%	155,496	100%

* Less than 1 percent
** Total represents patients for whom gender information was known

Of the new patients served by Title III EIS programs in 2001, 47 percent (n=16,905) were Black (not Hispanic), 28 percent (n=9,915) were White (not Hispanic), and 18 percent (n=7,047) were Hispanic. Asian patients accounted for one percent (n=262) of new patients served; Native Hawaiian/Pacific Islander patients and Native American/Alaskan Natives comprised less than one percent (n=37 and n=161, respectively) each of the new patient population in 2001. (See Appendix B, Table B-4).

Over the four-year period between 1998 and 2001, substantial increases were noted in the number of patients served by race/ethnicity category. As seen in Table 5, the number of Black (not Hispanic) patients receiving Title III EIS services increased by 57 percent from 46,353 in 1998 to 72,684 in 2001. There was a 54 percent increase in the number of White (not Hispanic) patients served (from 31,321 to 48,383) and the number of Hispanic patients rose 22 percent (from 24,780 to 30,306) over the four-year period. The number of Native American/Alaskan Native patients rose from 470 in 1998 to 713 in 2001, a 51 percent increase. Data for Asian and Native Hawaiian/Pacific Islander patients is available only for the two most recent reporting years. The number of Asian patients served increased 26 percent between 2000 and 2001, and the number of Native Hawaiian/Pacific Islanders served decreased by 18 percent.

Table 5. Number of Title III EIS Patients Served by Race/Ethnicity, 1998 – 2001

	1998	1999	2000	2001	Percent Change 1998 to 2001*
Black (not Hispanic)	46,353	47,067	56,024	72,684	+57%
White (not Hispanic)	31,321	34,034	41,284	48,383	+54%
Hispanic	24,780	25,099	26,450	30,306	+22%
Asian	*	*	903	1,134	+26%
Native Hawaiian/Pacific Islander	*	*	127	104	-18%
Native American/Alaskan Native	470	497	600	713	+51%

* Prior to 2000, race/ethnicity categories for Asian and Native Hawaiian/Pacific Islander were combined. Therefore, percent change for these categories is from 2000 to 2001 only.

HIV Exposure Profile

The most commonly reported HIV exposure category for males continues to be men who have sex with men (MSM). In 2001, Title III EIS grantees reported that 47 percent (n=51,074) of all male patients were exposed to HIV through sex with other men and 42 percent (n=10,429) of new male patients fell into this category (see Table 7). The second most common reported modes of transmission for all males reported by Title III EIS grantees was heterosexual transmission, with injection drug use (IDU) a close third; 20 percent of all male patients and 23 percent of new male patients were exposed to HIV through heterosexual contact (n=21,726 and n=5,521 respectively) and 16 percent of all male patients, 15 percent of new male patients through IDU (n=17,722 and n=3,592 respectively). (See Appendix B, Tables B-6a and B-6b).

The Title III EIS exposure data for 2001 shows that 66 percent of all and new female patients were exposed to HIV through heterosexual contact (n=29,859 and n=7,015 respectively) (see Table 6). The second most common form of exposure to HIV for female patients was IDU, which was attributed as the HIV exposure source for 20 percent (n=9,217) of all female patients and 17 percent (n=1,753) of new female patients. (See Appendix B, Tables B-7a and B-7b).

Exposure to HIV through perinatal transmission remains infrequent among Title III EIS patients. For 2001, Title III EIS grantees reported that 1 percent (n=1,889) of their patients became infected through perinatal transmission. The proportion of Title III EIS patients infected though perinatal transmission is similar to those reported in the previous 2 years.

Table 6. HIV Exposure Categories by Gender for Total and New Title III EIS Patients in 2001

	Males				Females
	All Patients		New Patients		All Patients		New Patients
Exposure Category	Number	Percent	Number	Percent	Number	Percent	Number	Percent
Men who have sex with _men	51,074	47%	10,429	42%	-	n/a	-	n/a
Injection drug use	17,722	16%	3,592	15%	9,217	20%	1,753	17%
Men who have sex with men and injection drug use	5,306	5%	1,019	4%	-	n/a	-	n/a
Hemophilia or coagulation disorder	503	*	54	*	159	*	36	*
Heterosexual contact	21,726	20%	5,521	23%	29,859	66%	7,015	66%
Mother with or at risk for HIV infection (perinatal)	882	1%	211	1%	1,007	2%	262	3%
Receipt of blood transfusion/ blood components/tissue	749	1%	138	1%	576	1%	125	1%
Other risk, risk not reported, or risk unidentified	11,861	11%	3,620	15%	4,795	11%	1,372	13%
Totals	109,823	100%	24,584	100%	45,613	100%	10,563	100%

* Less than 1 percent

Exposure Category by Gender and Race/Ethnicity

Sixty three percent (n=25,295) of White (not Hispanic) males reported having been exposed to HIV through sex with other men (see Table 7 below). In contrast, 35 percent (n=15,731) of Black (not Hispanic) males, 40 percent (n=8,772) of Hispanic males, and 46 percent (n=401) of Asian males reported HIV exposure through sex with other men. Fifty-three percent each of Native Hawaiian/Pacific Islander and Native American/Alaskan Native males (n=45 and n=295 respectively) reported sex with other men as their exposure to HIV. Twenty-eight percent (n=12,582) of Black (not Hispanic), 26 percent (n=224) of Asian, 24 percent (n=5,138) of Hispanic, and

23 percent (n=19) Native Hawaiian/Pacific Islander males reported exposure to HIV through heterosexual contact, compared with 9 percent (n=3,429) of White (not Hispanic) and 13 percent (n=74) of Native American/Alaskan Native males. This discrepancy may be attributable to cultural differences in acceptance (and therefore, reporting) of homosexual activity. Exposure through injection drug use was highest among Hispanic and Black (not Hispanic) males, accounting for 21 percent (n=4,592) and 20 percent (n=8,900) of exposures respectively. Injection drug use was reported as the HIV exposure category for 12 percent (n=67) of Native American/Alaskan Native, 10 percent (n=3,935) of White, seven percent (n=62) of Asian, and two percent (n=2) of Native Hawaiian/Pacific Islander males. MSM and IDU accounted for 12 percent (n=65) of HIV exposures among Native American/Alaskan Natives, 6 percent of exposures for White (not Hispanic) and Native Hawaiian/Pacific Islanders (n=2,542 and n=5, respectively), and 4 percent of exposures for Black (not Hispanic) (n=1,762), Hispanic (n=831) and Asian (n=38) male patients in 2001. Hemophilia or coagulation disorder, perinatal, and blood transfusion/components/tissue each accounted for two percent or less of exposures for males in all racial/ethnic groups. Appendix B, Tables B-6 through B-8b provide more information on identified exposure categories for patients served by Title III EIS grantees in 2001.

Table 7. HIV Exposure Categories by Race/Ethnicity Categories for Male Patients, 2001

Exposure Category	Black (not Hispanic)	White (not Hispanic)	Hispanic	Asian	Native Hawaiian/ Pacific Islander	Native American/ Alaskan Native	Total
Men who have sex with men	35%	63%	40%	46%	53%	53%	47%
Injection drug use	20%	10%	21%	7%	2%	12%	16%
Men who have sex with men and injection drug use	4%	6%	4%	4%	6%	12%	5%
Hemophilia or coagulation disorder	*	1%	*	1%	1%	*	*
Heterosexual contact	28%	9%	24%	26%	23%	13%	20%
Mother with or at risk for HIV infection (perinatal)	1%	*	1%	*	*	*	1%
Receipt of blood transfusion/components/tissue	*	1%	*	2%	1%	2%	*
Other risk, risk not reported, or risk unidentified	11%	10%	10%	13%	13%	7%	11%
Totals	100%	100%	100%	100%	100%	100%	100%

* Less than 1 percent.

Exposure through heterosexual contact was the predominant mode of transmission for female Title III EIS patients across all racial/ethnic groups in 2001, accounting for more than 60 percent of HIV infections for females in all racial/ethnic groups (see Table 8). Of all females receiving services, 80 percent of Native Hawaiian/Pacific Islander (n=16), 79 percent of Asian (n=212), 69 percent of Hispanic (n=5,907), 66 percent of Black (not Hispanic) (n=18,219) and 61 percent of White (not Hispanic) (n=5,126) females were reported in this exposure category (see Appendix B, Table B-7b). IDU was identified as the exposure category for 26 percent (n=2,158) of White (not Hispanic), 22 percent (n=35) of Native American/Alaskan Native, 20 percent (n=5,425) of Black (not Hispanic), 18 percent (n=1,498) of Hispanic, 10 percent (n=2) of Native Hawaiian/Pacific Islander, and 5 percent (n=14) of Asian females.

Table 8. HIV Exposure Categories by Race/Ethnicity Categories for Female Patients, 2001

Exposure Category	Black (not Hispanic)	White (not Hispanic)	Hispanic	Asian	Native Hawaiian/ Pacific Islander	Native American/ Alaskan Native	Total
Injection drug use	20%	26%	18%	5%	10%	22%	20%
Heterosexual contact	66%	61%	69%	79%	80%	64%	66%
Mother with or at risk for HIV infection (perinatal)	2%	2%	3%	2%	*	*	2%
Receipt of blood transfusion/components/tissue	1%	1%	1%	3%	5%	1%	1%
Other risk, risk not reported, or risk unidentified	11%	10%	9%	11%	5%	13%	11%
Totals	100%	100%	100%	100%	100%	100%	100%

* Less than 1 percent.
Note: Less than one percent of females in all age categories reported hemophilia or coagulation disorder as exposure
category

Tuberculosis Diagnosis

Title III EIS grantees routinely test primary health care patients for tuberculosis (TB). If TB is present, then patients are classified based on whether the TB is active or newly active. “Active TB” includes diagnosed pulmonary or extra-pulmonary tuberculosis and excludes patients with a positive tuberculin skin test but no evidence of disease. “Newly active TB” is tuberculosis that has become present either as a relapse case or a reactivated case during the reporting period. Title III EIS grantees also report whether or not a diagnosis of multi-drug resistant tuberculosis (MDR-TB) was made (definitively or presumptively), and whether or not TB prophylaxis (preventive therapy) was clinically indicated (Appendix B, Table B-13).

Title III EIS grantees reported that less than one percent of the total number of unduplicated HIV-positive patients in primary health care had active TB (n=893 or 0.6 percent), half (n=445) of whom were newly active cases in 2001 (See Table 9). Thirty-three (3.7 percent) of the patients diagnosed with active TB were definitively or presumptively diagnosed with MDR-TB. In 2001, TB prophylaxis was clinically indicated for one percent (n=1,873) of all Title III EIS patients.

Table 9. Tuberculosis Diagnoses Among Title III EIS Patients, 2001

Title III EIS Patients	Number of Patients	(Percent of All Patients)
Total Title III EIS Patients	157,803	(100.0%)
HIV+ Patients for Whom TB Prophylaxis was Clinically Indicated	1,873	(1.2%)
HIV+ Patients with Active TB Diagnosis	893	(0.6%)
HIV+ Patients with Newly Active TB	445	(49.8% of patients with active TB)
HIV+ Patients with Active and MDR*-TB	33	(3.7% of patients with active TB)

* Multi-drug resistant tuberculosis

Pregnant Women

During the 2001 reporting period, 1,923 HIV-positive pregnant women (four percent of all women served) received primary care services from Title III EIS grantees. This represents an increase of 24 percent from the 1,549 HIV-positive pregnant women served in 2000. Twelve percent (n=226) of the pregnant HIV -positive women were referred to clinical trials by Title III EIS grantees in 2001. Since 1998, referrals to clinical trials have dropped sharply from a high of 31 percent in 1998, to18 percent in 1999, 17 percent in 2000, and 12 percent in 2001. Detailed information about HIV-positive pregnant women by State can be found in Appendix B, Table B-12.

Disease Status of New Patients at Intake

The Title III EIS Program Data Report requests that grantees report Centers for Disease Control and Prevention (CDC) stage of HIV classifications for new adults and adolescents and new infants and children who receive primary health care services. Each patient’s classification is to be determined by a clinician who describes the patient’s stage of HIV disease. Information on these CDC classifications is reported when available. However, it can be reported as unknown or left as missing when the data are not known. Therefore, the number of new patients reported in the CDC classifications may not be equal to the number of new patients reported by grantees.

Adults and Adolescents

“Adults and adolescents” include patients aged 13 years or older. The CDC has defined three basic HIV disease stage classifications for adults and adolescents based on CD4⁺ T-cell counts: greater than or equal to 500/µL, between 200-499/µL, and less than 200/µL. Lower CD4⁺ counts indicate latter stages of HIV disease. These classifications are further divided into three symptom categories: asymptomatic HIV infection, symptomatic conditions, or AIDS indicator conditions.

In 2001, Title III EIS grantees reported CDC classification data for 30,872 new adult and adolescent patients. Thirty-percent of new patients (n=9,301) were classified in the category greater than or equal to 500/µL; 35 percent (n=10,887) were classified with a CD4⁺ count in the 200-to-499/µL category; and 35 percent (n=10,684) were classified with a CD4⁺ count of less than 200/µL. Seventy-three percent (n=6,810) of adult patients with CD4⁺counts greater than or equal to 500/µL and 58 percent (n=6,330) of patients with CD4⁺ counts between 200 and 499/µL exhibited no symptoms at intake. In contrast, 74 percent (n=7,953) of patients with CD4⁺ counts below 200/µL were either symptomatic or had AIDS indicator conditions at intake. See Appendix B, Tables B-2a, B-2c, and B-9a for more detailed information about disease status for adults and adolescents.

Infants and Children

“Infants and children” include patients below the age of 13 years. The CDC has defined three basic classifications for infants and children based on level of immune system suppression: no evidence of suppression, moderate level of suppression, and severe evidence of suppression. Greater levels of suppression are indicative of weaker immune systems. These classifications are further divided into four symptom categories: no signs or symptoms, mild signs or symptoms, moderate signs or symptoms, and severe signs or symptoms.

In 2001, Title III EIS grantees reported CDC classification information for 214 new infants and children. Of these infants and children, 52 percent (n=122) had no evidence of suppression, and of these, 71 percent (n=87) had no symptoms. Of the 21 percent (n=45) of infants with moderate suppression, less than half (40 percent, n=18) had moderate or severe symptoms, and of the 22 percent (n=47) of infants and children with severe suppression, 81 percent (n=38) had moderate or severe symptoms. This distribution of pediatric patients in the symptom categories within the suppression classifications is presented in Appendix B, Tables B-2b, B-2c, and B-9b.

Income and Payment Information

The Title III EIS Program Data Report requests household income and payment source information for new primary health care patients when they first entered the EIS program. Patients can only be classified into one income category. However, patients can be classified into more than one payment source category, depending on the number of payers the patient uses. Title III EIS grantees report income and payment information only for the new patients served and the services they receive within the Title III EIS program during the reporting period. Therefore, the information presented here is assumed to reflect the financial and insurance status of new patients when they first entered the Title III EIS program.

Income

Household income information was reported for 85 percent (n = 30,287) of the total new patients for whom data were reported in 2001. Of these patients, nearly three-

quarters (72 percent, or n=21,695) reported household incomes equal to or below the Federal Poverty Level ($17,650 for a family of four within the 48 contiguous United States in 2001). See Figure 2 and Appendix B, Table B-1.

Figure 2. Percentage Distribution of New Title III EIS Patients by Income Category, 2001 (N=30,287)*

Equal to or below FPL** 61%
101 - 200% FPL 13%
201 - 300% FPL 6%
More than 300% FPL 5%

* Income data missing for 5,305 new HIV+ patients
** Federal poverty level is $17,650 for a family of four in 2001

Payment

The vast majority of new patients served by Title III EIS programs in 2001, were either uninsured or were enrolled in a public health insurance program. Of the new patients for whom payment source information was reported, 42 percent (n=14,866) reported having no insurance of any type, 30 percent (n=10,642) reported having Medicaid, and 7 percent (n=2,556) had Medicare insurance coverage (see Figure 3). An additional nine percent (n=3,207) reported having other payment sources, which includes other public insurance programs such as the Veterans Administration, TriCare/CHAMPUS, health care programs for incarcerated individuals, and other State and federally administered programs. Only 12 percent (n=4,159) of Title III EIS patients reported having private insurance coverage. The total of these percentages may exceed 100 percent because patients can have more than one payment source. See Appendix B, Table B-2.

Figure 3. Distribution of New Title III EIS Patients by Type of Insurance, 2001

Private Insurance , Medicare, Medicaid, No Insurance, Other**

* The Title III Program Data Report requests source of payment information for NEW primary health care patients only .
** Includes TriCare/CHAMPUS, Veterans Administration, health care programs for incarcerated individuals, and other public programs

Service Characteristics

Title III EIS grantees are expected to offer a comprehensive continuum of outpatient/ambulatory HIV care including primary medical care, and when applicable, prenatal care. All Title III EIS programs are expected to provide the following services, either on-site or by referral to a facility with which the Title III EIS program has a formal arrangement:

HIV counseling, testing, and referrals;

Counseling and education on living with HIV disease, including availability and use of treatment therapies;

Appropriate medical evaluation and clinical care, such as CD4⁺ monitoring, viral load testing, antiretroviral therapy, prophylaxis and treatment of opportunistic infections, malignancies, and other related conditions;

Oral health care, outpatient mental health care, outpatient substance abuse treatment, nutritional services, and specialty medical care either directly or through a formal referral mechanism; and

Appropriate referrals for other health services.

Grantees are required to spend a minimum of 50 percent of their Title III EIS funds for providing primary care services to HIV-positive individuals, but the grantees are encouraged to spend more than this amount for primary care services. Grant funds may be used to pay the costs of providing optional services but only to the extent that these services are necessary to engage or retain patients in care. Optional services include outreach, case management, and eligibility assistance.

Primary Health Care Services

Title III EIS programs are required to provide outpatient primary health care to all HIV-positive patients. The Ryan White CARE Act describes this service category as encompassing preventive, diagnostic, and therapeutic health services. This range of clinical services includes continuous medical care and periodic evaluations; laboratory and radiology tests; oral health care; other treatments for HIV infection; and prophylactic and treatment interventions for complications of HIV infection, including opportunistic infections, opportunistic malignancies, and other AIDS defining conditions.

Many Title III EIS grantees offer additional primary health care services. In 2001, more than half of grantees offered nutritional counseling, mental health counseling/treatment/therapy, obstetrics/gynecology services, oral health care, on-site dispensing of pharmaceuticals, substance abuse counseling and treatment, optometry/ophthalmology services, and/or dermatology services as part of the clinical services offered in their Title III EIS programs (see Table 10 and Appendix C, Table C-5).

Table 10: Number and Percent of Title III EIS Program Grantees Providing Primary Care and Various Clinical Specialty Services Directly and by Referral to Other Providers in 2001 (n=248)

Type of Service	Services Available Within the Title III EIS Program		Services Available Through Referral to Other Providers
Type of Service	Number of Grantees	Percent of all Grantees	Number of Grantees	Percent of all Grantees
Outpatient Primary Care	248	100%	-	-
Nutritional Counseling	230	93%	113	46%
Mental Health Counseling/ Treatment/Therapy	218	88%	180	73%
Obstetrics/Gynecology	195	79%	161	65%
Oral Health Care	189	76%	176	71%
Substance Abuse Counseling and Treatment	175	71%	197	79%
Dispensing of Pharmaceuticals	167	67%	171	69%
Optometry/Ophthalmology	148	60%	187	75%
Dermatology	128	52%	174	70%
Gastroenterology	120	48%	177	71%
Neurology	114	46%	171	69%
Physical, Occupational, or Rehabilitation Therapy	90	36%	162	65%

* Because of the broad service category definitions, the sums of the rows can be greater than 100 percent. For example, in the category “Mental Health Counseling/Treatment/Therapy” a grantee may offer the services of a psychologist, but refer out for psychiatric services. This grantee would report the Mental Health services as available both “within” the Title III EIS, and “through referral.

In addition to providing services within the Title III EIS programs, grantees are expected to refer patients to agencies, hospitals, and other ambulatory health centers for clinical specialty services. Grantees report the types of services to which patients are referred, and provide counts of patients referred by agency type as listed in the Title III EIS Program Data Report. Of the 248 reporting Title III EIS grantees, 226 or 91 percent provided referral services during the 2001 reporting period. The types of clinical services available through referral as well as the number of Title III EIS programs referring patients for these services are summarized in Table 10 (see also Appendix C, Table C-1).

HIV Counseling, Testing, and Referral Services

All Title III EIS grantees must make HIV counseling, testing, and referral services available at the grantee’s health care facility or at another readily accessible site to all individuals in the targeted service population. If counseling and testing is not available on site, the program must demonstrate a formal referral mechanism with an existing testing site(s) that ensures availability of referral for HIV -positive persons >from the testing site to the Title III EIS program. Counseling and testing (with informed consent) as defined by Title III EIS program guidance includes the following: 1) pretest counseling; 2) counseling individuals with negative test results; and 3) counseling individuals with positive test results.

Ninety-four percent (n=233) of Title III EIS grantees reported that they directly provided counseling and testing services in 2001. The other six percent of grantees provide counseling and testing services through other formal contractual arrangements. Two-thirds of grantees (n = 163) used Title III EIS funds to provide counseling and testing services. (See Appendix C, Table C-1).

Title III EIS grantees collectively provided pre-test counseling to 417,887¹individuals, 93 percent (n=387,061) of whom were then tested for antibodies to HIV. Of those, 97.6 percent (n=377,669) tested negative for HIV antibodies. The overall seropositivity rate, that is, the number of individuals who test positive divided by the total number of individuals tested, was 2.4 percent. Positive results were reported for 9,392 individuals. Of those individuals testing positive for HIV, 19 percent (n=1,800) did not return for post-test counseling. Table 11 summarizes counseling, testing, and referral services provided by Title III EIS grantees in 2001 (see Appendix C, Table C-3).

Table 11. Number and Percent of Individuals Receiving Counseling and Testing Services as Reported by Title III EIS Programs in 2001* (N=233)

	Individuals Receiving Services
Counseling and Testing Services Provided	Number	Percent**
Individuals Received Pre-Test Counseling	417,887
Individuals Tested for HIV	387,061	92.6%
Individuals Testing Negative for HIV	377,669	97.6% of those tested for
Individuals Testing Positive for HIV	9,392	2.4% of those tested for HIV
Individuals Receiving Post-Test Counseling (return rate)	239,332	61.8% of those tested for HIV
Individuals Testing Positive for HIV That Did Not Return for Post-Test Counseling	1,800	19.2%of those testing positive for HIV

* Counseling and testing services are provided either directly by the grantee organization or through formal agreements with other service providers

** Percentages will not sum to 100

1 This number reflects all persons who received pre-test counseling by the 233 Title III EIS grantees who provide this service directly, regardless of whether or not these counseling services were paid for by the Title III EIS grant and whether or not the counselee went on to become a primary care patient.

Table 12. Comparison of Numbers of Persons Receiving Confidential vs. Anonymous Counseling and Testing Through Title III EIS Programs in 2001

	Confidential		Anonymous
	Number	Percent	Number	Percent
Grantees providing counseling and testing services	169	73%	63	27%
Individuals tested for HIV	286,646	-	100,303	-
Individuals who tested HIV+	7,947	2.6% of persons tested for HIV	180	1.9% of persons tested for HIV
Individuals who received post-test counseling